However (anyone out there surprised there is a however?), when the dotor came out to talk with us he said the only problem was that the assisting nurse took out his GJ tube thinking it was a G tube. Apparently this doctor likes to remove the G-tube buttons while he operates and then puts them back when he is done. Well, during prep the nurse deflated the ballon that keeps the button in place and began pulling it out, only to realize that it is not the short G tube, but the long GJ that needs to be precisely placed in the radiology dept.
So, while we were in recovery with Tomas, radiology calls to say they have an opening at 3pm and he can go to get the tube placed, but that means going back under general anesthesia only 4 hours after he woke up from the first one, and they don't work with a pediatric anesthesiologist, just an adult one. I was about to throw a fit when Tomas' recovery room nurse (different from the Operating Room nurse) does it for me. She practically screams into the phone that he ABSOLUTLY has to have a pediatric anesthesiologist and she is not sending him anywhere until they get one. So the scramble began.
Meanwhile, a tech from the radiology dept. comes to Recovery to collect Tomas' tube to make sure they have the same one to put in. He said they don't usually do this kind he'll probably have to order it. Well, the last hospital took over a week to get one. It wasn't as urgent then but remember we have no other way to feed him. So now the talk turns to how many days we'll have to stay, because he'll need to be on IV fluids and if it takes too long they'll switch to TPN feeds until the tube arrives. Scramble number 2 begins, this time to try and get the new tube ASAP.
Around 2pm Tomas got sent up to his room and we were still waiting to hear what was going on with finding a Dr. and a tube. At 3pm some transport people came to take him to radiology. I freaked. It turned out, that his anesthesiologist from that morning was still at the hospital and available to do the procedure, and that the GI doc had said it was ok just to re-place Tomas' tube and not wait for a new one. It would have been nice for someone to tell us. What if I had gone to get a cup of coffee or something to come back and find him gone!
Anyway, Tomas came out of anesthesia fine for the second time in 5 hours and had an uneventful night. I made sure they kept on top of his pain meds so there would be no tearing open like last time.. This morning cardiology rounded on him, but doesn't think his bradycardia's are anything to worry about (more on that another time - this post is already going to be long). Oncology came next. His RBC count is still normal, but his platelets have dropped considerably in the last 2 months (although still just above the normal range). Also he has moderate/close to severe nuetropenia (low infection fighting WBC). There is an injection if it gets severe enough, but it can trigger the luekemia cells so the Dr. says he only does it if is absolutely necessary.
He has a follow up with surgery next week and oncolgy in 3 weeks.
Now for the oximeter saga continuation. The home health company called me on Wednesday saying the machine that they picked up on Monday was only able to record 2 hours worth of data because Tomas moved too much. Really, you think a nine month old might move a lot? So they are going to order a special machine that will record even with movements and bring it out next week. So much for getting the data recorded before the surgery.
I am most grateful for all your prayers, and kindnesses. When I stop to think of the prayers that were said for him yesterday I am so overwhelmed. Thank you, thank you, thank you.